Approximately 1 in 50 children has a persistent tic disorder (PTD), including Tourette syndrome (TS).¹ A PTD diagnosis requires the presence of motor and/or vocal tics before age 18 years that persist for at least 1 year and are not due to another medical condition.² Although PTD symptoms may lessen in severity or resolve by young adulthood, they can persist throughout the lifespan.³ PTDs are associated with negative outcomes across the lifespan related to education, family and social functioning, quality of life, and engagement in health risk behaviors.^4-6 Public health can play a role in supporting individuals with PTDs through the provision of the 10 essential public health services, which include monitoring health status, diagnosing and investigating health problems, and ensuring the availability of essential health services.⁷

PTD outcomes can be improved by early identification of PTDs and receipt of evidence-based treatment when needed.^8,9 Approximately half of children with TS are undiagnosed.¹ Underdiagnosis of TS may be more common in Black and Hispanic populations,^4,10 suggesting possible disparities in health care access. Among US children diagnosed with TS, half saw at least 3 health care providers before being diagnosed.¹¹ A lack of knowledge or comfort in the identification and treatment of tic disorders may contribute to underdiagnosis.^12,13

Identification of PTDs requires access to health care, and treatment of PTDs often necessitates access to specialty health care.^8,9 Professional organizations in the United States, Canada, and Europe have published diagnostic and treatment guidelines that describe evidence-based practice for caring for children and adults with PTDs.^8,9,14,15 The guidelines each describe the assessment of PTDs, recommend psychoeducation about PTDs for individuals with these disorders and their families, and review the evidence base for behavioral and pharmacologic treatments as well as deep brain stimulation.

To inform improved health and well-being among individuals with PTDs, the authors conducted a systematic literature review focusing on health-related indicators and outcomes associated with tic disorders (herein referred to as outcomes) addressable through public health activities.¹⁶ This article summarizes the literature related to health care access, health care needs, and health care use among children and adults with PTDs compared to those without PTDs. The information from this review can inform future research, practice, and policies to improve identification and treatment of tic disorders.

Characteristics of the 15 articles are summarized in Table 2 and Table 3. All studies were from North America (7 from United States, 1 from Canada) or Europe (3 United Kingdom, 2 Spain, 1 France, 1 Sweden). Only 2 studies included adults.^19,20 Seven studies assessed clinical criteria for PTDs, 3 identified PTDs using medical records or claims data, and 5 identified PTDs based on caregiver or self-report of a previous diagnosis. Thirteen studies reported the sex distribution for individuals with PTDs; of these, the PTD group was at least 75% male in 6 studies. Of the 6 studies that reported on race or ethnicity, over 80% of the PTD group was White in 5 of the studies; in the sixth study, race/ethnicity was only reported for the full sample using health care claims data.²¹ Seven of the 15 articles included only TS, while the other 8 articles included a combination of tic disorders. Two studies reported findings for TS and chronic tic disorder separately.^21,22 Outcomes were measured using parent-report or self-report in 12 studies, data from health care records in 2 studies, and a combination of parent-report and self-report and health care records in one study (see Table 3). Four studies from North America were nationally representative, and a fifth included health care claims data from multiple US states; 5 studies were population-based with recruitment from schools (n = 2) or the community (n = 3), 4 were clinic based, and one used a convenience sample to complete an online survey. Nine studies included less than 100 individuals with PTDs and only one included more than 200 individuals with PTDs.

The studies are summarized in 6 outcome categories: routine care, specialty mental health care, other specialty care, medication use, nutritional supplements and special diets, and quality and satisfaction with care.

The current evidence shows that children with PTDs have similar access to, and use of, routine care as children without PTDs, but that children and adults with PTDs generally need and use more specialty health care, including mental health services. Children with PTDs may be more likely to use medications than children in the general population but may not be compared to children with other chronic health conditions. Children with PTDs also had unmet mental health care needs and underserved groups may experience difficulties accessing specialty clinics. Based on a limited number of indicators, children with PTDs generally received similar quality of health care but were less likely to receive care coordination and somewhat less likely to have a medical home than children without PTDs. Based on nationally representative data for US children, approximately 2 in 5 children (43.7% in 2007, 36.6% in 2011–2012) had care coordination, and less than 2 in 5 had a medical home (38.9% in 2007, 33.7% in 2011–2012).^4,23 Although the composite measure of health care transition planning did not differ between children with TS and children without MBDDs, the overall estimate was very low for both groups (12.4% TS vs 14.2% for children without MBDDs).³³

Although the identified literature documented more health care needs and specialty health care use among children with tic disorders than the general population, we identified several gaps in the literature. First, only 15 studies were identified that were published since 2003 and included a comparison group, and these studies were limited to North America and Europe. Most (10) of the included studies used data from 2000 to 2013, and only one study included data on over 200 individuals with PTDs. Among these studies there were limited data on adults, most included a majority of White participants, and only one stratified results by sociodemographic characteristics (Medicaid vs private insurance),²¹ which prevented summarizing the disparities beyond comparison to individuals without tic disorders. Only 2 studies included data stratified by tic disorder type (TS and chronic tic disorder).^21,22 Most of the studies relied on parent or self-report; while these data may reflect individuals’ experiences, additional data with objective measures (eg, medical records) would allow for validation of these findings. In addition, limited data were available on the use of behavioral therapy, and most indicators of mental health treatment were not specific (eg, use of psychotropic medication or psychotherapy) limiting inferences on whether treatments were evidence based (ie, specific medications and behavioral treatments recommended by professional guidelines). Only one study was available on health care transitions from adolescence to adulthood and no studies reported on costs associated with tic disorders. Future studies could prioritize recruitment of diverse populations, including comparison groups of individuals without PTDs, with large enough sample sizes to stratify by sociodemographic characteristics to document health disparities in access to and use of health care among individuals with PTDs. Ongoing documentation of health care needs and health care use can inform future programmatic work to improve identification and treatment of PTDs.

The higher co-occurrence of mental disorders among children with PTDs compared to those without and professional guideline recommendations for behavior therapy and psychotropic medications as evidence-based treatments for tic disorders reflect the increased needs for these services for the long-term health and well-being of individuals with PTDs.^8,9,14,15 Individuals with PTDs and co-occurring neurobehavioral or mental health disorders may experience more challenges with school, lower quality of life, and greater tic severity.^4,11,20 Although co-occurring mental disorders are common among children with PTDs, findings based on US health care claims data in 2000 to 2007 reported a low percentage of children with TS and public insurance who had a mental health assessment (10.5%) or psychotherapy (16.7%); the corresponding numbers for privately insured children with TS were 24.0% and 35.5%.²¹ In addition, nationally representative data for US children in 2011 to 2012 showed that, based on parent report, just over half of children with TS received treatment from a mental health professional in the past year, and 2 in 5 had an unmet mental health care need in the past year.⁴ Together these data suggest possible unmet mental health care needs among children with PTDs.

Given the underdiagnosis of PTDs in the United States¹ and the findings reported here suggesting children with PTDs often have access to routine health care,^4,22-24 improving identification and management of PTDs in primary care settings may improve specialized health care access for individuals with PTDs. Public health approaches that leverage policy and systems changes to improve population-level mental health care access have been described.^34,35 The US Department of Health and Human Services Roadmap for Behavioral Health Integration can support opportunities for improved access to mental health services within primary care settings.³⁶ Telehealth is an approach that has been expanded since the coronavirus disease 2019 pandemic and may increase access to specialty care and evidence-based treatments among individuals with PTDs in underserved communities; although research on and quality guidelines for this population are limited.³⁷ Community health workers may also play a role in identification of tic disorders.¹⁰ To address providers self-reported lack of knowledge and comfort related to PTDs,^12,13 provider trainings on the identification and management of PTDs, inclusive of co-occurring conditions, were developed and are available through the Tourette Association of America (TAA)^a and the American Academy of Pediatrics^b. In addition, TAA’s Centers of Excellence^c are hubs for tic disorder coordinated care and specialist services; expansion of the expertise and referral networks from the Centers of Excellence to increase local provider capacity could help address gaps.

In summary, this review documents specialty health care needs and health care use, including mental health care, among individuals, mostly children, with PTDs. There are numerous gaps in the literature that preclude conclusions on disparities in accessing needed health care among individuals with PTDs. Future studies with recruitment focused on inclusion of diverse populations of individuals with PTDs could help to address these gaps. The findings reported here can be used to inform public health activities and clinical supports for increasing access to care around priority needs for individuals with PTDs.